I have blogged about explaining Inhumane pain and have tried to describe the attacks, pain and after math best I have. I have explained in posts below what Cluster Headaches do to us physically, emotionally and mentally during the attack and after. What I have not yet discussed is what we ask from strangers and friends. Loved ones already know.
First and foremost, a friend will run to you, not away from you because your sick. This should exemplify who should read this.
I have spoken to Cluster headache survivors around the world from almost every continent. Universally I would be safe to assume (please correct me if I am wrong) but I do not think there is a single person who seeks pity, sorry, being felt bad for, or looking for a hand out.
What we desire is understanding, compassion, empathy and acknowledgement that we suffer from the most painful, incurable disease on the planet. That during or after an attack we are physically, emotionally and mentally exhausted despite that severity of the attack. A simple, is there anything I can do, or are you OK? Can I get your meds, or ? A simple, I understand your not feeling well. We can reschedule or I am here for you to talk to if you would like company. These suggestions speak VOLUMES about a persons sincerity. You can hurt a person much more by bailing, taking off. Not visiting, not calling, not enquiring. None of us want "Oh you poor thing." we prefer or at least I do, how I can continue on with my life and leave where I left off...not...where did everyone go? What happened to everybody??? I had 4 brain surgeries. What I thought were my dearest of closest of friends for over 25+ years did not show, call, write, email, send a card or tell a friend for one single of my brain surgeries. I speak first hand of abdonment.
Remember, I may not be your friend, but it could very well be your: father,mother,son,daughter,brother or sister who has this. Would you treat your family the same way?
I sincerely, would hope not and give us the same respect to us.
What we experience is a cluster headache. Commonly known as a suicide headache for obvious reasons. Less than 0.01 % of the world has this incurable disease. Attacks range from 30 min to 3 hours long. I have had as many as 15 attacks in one day. There is episodic and chronic like me. For almost 8 years(July 25,2005) I have had this condition. For me personally I do like when my wife and or son is there to comfort me, a simple hand on the back means everything. To others they prefer to be alone. Respect either way. Give them space. There is absolutely nothing you can do, however running away, treating us like a zombie is far more hurtful. We may or may not ask for help. But we certainly appreciate people who stick around after to see if we are OK and want to continue our day with them if we can. We did not spoil your plans on purpose. We did not ask to be this way and if there was a way we could stop it, obviously we would. We apologise in advance for an inconvenience we have caused you. And ultimately don't want to be treated as an alien. Man up, be an adult. Be a friend, be a co worker, be a person with compassion. Just don't pity us. Sadly allot of us find out the hard way who is a selfish self righteous bastard. Its OK. We have forgiven and forgotten those who are cowards. If you want to make a Cluster Heads day. Treat them the same before they got sick.
No part of this blog was written in haste, despite or anger. Its fact of reality. The more us Cluster Heads educate non Cluster Heads, we are one step ahead for the next attack.
Blessings, and please forward to anyone you might think that should read this. The list should be LONG. In case you missed it. Here is a pic.
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